The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

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Sunday, January 13, 2013

Countess plays Smackdown again!

As per Rosie Cox, the text below is the original letter sent to theIndependent on Sunday in reply to an earlier piece. The IoS had promised toprint the full version online with the shortened 140 word version in thepaper edition. As of this writing, the full copy (below) is not online.

Sir

Professor Peter White, on behalf of himself and his 26 co-signatories, hasapologized to the three of us following the publication of their letter on2 December 2012. He made it clear that he did not intend to imply that wewere harassing Professor (now Sir) Simon Wessely. We were not harassinghim. None of us believes that harassment is a means of advancing scientificdebate, and certainly not in promoting a greater understanding of thecauses of ME/CFS.

In the IoS article of 25 November 2012 we were criticizing the award of theMaddox Prize to Professor Wessely because it is axiomatic that the progressof scientific understanding depends upon sound evidence. Sir Paul Nurse,President of the Royal Society, has said: "The John Maddox Prize is anexciting new initiative to recognize bold scientists who battle to ensurethat sense, reason and evidence base play a role in the most contentiousdebates."

We are in complete agreement with Sir Paul. We would wish the scientificprocess to prevail, whereby the extensive peer reviewed biomedical evidencebase on ME/CFS is acknowledged and used by all researchers in the field toadvance the understanding of the disorder, and we have been calling forthis for many years.

There can be no doubt that the cause of ME/CFS is a contentious issue andthat there remain many unanswered questions. Both Professor White and SirSimon Wessely have promoted an hypothesis that ME/CFS is due to an abnormalillness belief; that it is perpetuated by dysfunctional beliefs and copingbehaviours, and that cognitive behavior therapy (CBT) and graded exercisetherapy (GET) are effective treatments for the condition. In an attempt toprove this hypothesis Professor White, principal investigator, andcolleagues, including Sir Simon, conducted what has become known as thePACE trial, published in February 2011 in The Lancet, at a cost of some £5mto the taxpayer. No data on recovery rates and positive outcomes have beenreleased and a FOI request to Queen Mary University of London revealedthat: "The requested data relating to recovery rates and positive outcomesdo not exist. That is to say that such analyses have not been done andthere is no intention to do so. The reason for this is that the analysisstrategy has changed from the original protocol."

There has been no attempt by Professor White to correct the misapprehensionin respected journals as well as the popular press that the PACE trialdemonstrated recovery rates of between 30% and 40%. The release of all thedata relating to the PACE trial would be the most telling indication of theefficacy of CBT and GET and would contribute very effectively to theevidence base that precise scientific enquiry demands.

In our view, the idea that ME/CFS owes its origins to a dysfunctional psyche is an hypothesis that lacks any scientific evidence base. We are therefore at a loss to understand why the Maddox Prize was awarded to the defender of that hypothesis rather than to someone who was upholding the spirit of true scientific enquiry.

Our main interest is in advancing the scientific understanding of the causeof a frequently devastating and debilitating condition which blights thelives of many thousands of people. We do not believe that personal attacksdirected against Professor Sir Simon Wessely will advance the cause, butreserve the right to direct criticism at the hypothesis both he andProfessor White continue to espouse. We believe that a proper scientificunderstanding of the cause(s) of ME/CFS will emerge in the fullness of time.

The Countess of MarProfessor Malcolm HooperDr William WeirHouse of LordsLondon SW1